When you are diagnosed with a chronic disease like Crohn’s Disease or ulcerative colitis, there is a lot of unknowns. While the statistics are approximated, roughly 40% of people who suffer from ulcerative colitis and 75% of people who have Crohn’s Disease will need surgery at some point in their life. I do not say this to scare anyone but merely to make a point- which I will get to 🙂
There are so many surgeries that those people who suffer from IBD could undergo.
And sometimes, those of us who have had surgery (or multiple surgeries), do not absorb medications properly. That is not the case for everyone by any means but it does hold true for many of us. For example, I was told by my colorectal surgeon and gastroenterologist that I should never take an extended release pill because it wouldn’t help me given I no longer have a colon and now live with an ileostomy.
Unfortunately, since there is no way to prove this, other doctors have told me I was incorrect and prescribed these types of medications for me anyway. And just like my surgeons and GI said, they did not help because my insides are very different from your average person.
Medications that should last four-six hours seem to last about a half an hour to an hour if I am lucky.
I’ll try to shorten this story as much as possible, but we had to stay in a hotel near the hospital since it was two infusions for three days in a row. I am a soup junkie and also enjoy it boiling hot. I ended up spilling it and needed to immediately go to urgent care. I was in more pain than I knew what to do with. Without asking, the doctor told me she was going to write me Tylenol with codeine since my burn was so bad and my dad told her not to. We were trying to deal with my migraines and he was afraid it would ruin the progress we were making. I was worried too but I also couldn’t stop screaming from the pain and like most of you reading this, I have a very high pain tolerance.
The doctor said she was going to give me the script in case I needed it because she knew how bad this burn was (and thank God she did!) When my dad also saw my pain level, despite them wrapping it up and putting soothing cream on it, he went to fill the prescription. I took what was prescribed and within about twenty minutes, I felt like a whole new person. My heart wasn’t pounding from the pain and I just felt better. Roughly 45 minutes later, I was back to screaming in agony. I think then my dad saw that when I would tell both him and my mom that medications don’t last very long for me, that maybe, just maybe I wasn’t kidding.
Anyway, the point of sharing that was because it is unfortunate that there is no way to prove this.
When I say I need more medications than your average person for something to help, most people don’t believe me and I probably come off sounding like a drug addict.
If any of you reading this can relate, I would love to hear how you cope. Do you have understanding doctors? What about your loved ones? Do they believe you?